Totweek and Stuff =)

Hey guys!!

So, I had an amazing time while I was away!
I made it all the way to Darlington without any trouble on the trains, which is basically a miracle in itself. =P
And somehow I resisted the urge to go to Hogwarts...



And I reminded myself of just how gorgeous St Pancras Station is. It is such an amazing building.


And I loved every second while I was there. Everyone made me feel so welcome, and I cant wait to go back!!

Got my sinus operation booked for the 15th September now. I'll give myself a couple of weeks to recover from that, and then I think I'll be heading back to go see everyone. I cant wait!

Off out tomorrow night, to a BBQ/Party for Clives birthday. Will be strange because I havent spent any real time with that family for a long time. Me and Ryan grew up with Paula and Clives children.

Then next weekend is Liz's hen night! And the following weekend is her wedding!! EEEEEEEP! So excited for her. =)

xxxxxx

Catch Up

Hiiiii.

So yeah, I'm still here! I've just been really quiet for a few weeks.
Basically, because I've just had complete writers block, and nothing worth writing about.

I was only in hospital a couple of days after my last post, and then the doctors sent me home because the drugs werent making me better, and were just making me sick.
Shortest admission ever.

I had clinic at Addenbrookes about my sinuses, (FINALLY) and the Consultant, (Same one I saw last year!) thinks I will probably need another operation. We're just waiting on a CT scan, to confirm what he thinks.
So I have a CT scan booked for the 20th, and then clinic again on the 21st. Wow, thats a fun couple of days. Lol.

Its nearly time to go up north!! SO EXCITED. Just 2 more sleeps now and then off to see Michael and Clairey!!
Will be leaving Leagrave about half ten on thursday. Not long now!! I'm pretty much packed, just the last minute stuff left, like chargers.
Good job really, because half my case it taken up by bloody birthday presents!! 8-)

Anyway, I daresay I'll have loads to tell you when I get home next tuesday. And then theres lots of stuff coming up, so I should be back a bit more. Birthdays, Lizs hen night, Lunches with friends, lots of exciting fun stuff!!

Love you all.
xxxxx

Sneak Tot Attack!

Soooo.
I'm back in Papworth. Today was day 4.

Fun times.
On Imipenem and Septrin. And wow, that combination has somehow majorly upset my reflux. I cant eat anything without wanting to be sick. Its not pleasant, and it hurts. A lot. =(

Which meant, I was all mopey and sulky because I had to miss Danni's party on saturday night, and I couldnt go to London to see Michael and Claire yesterday.
I did miss Danni's party... I was NOT expecting Stiv and Claire to turn up in my doorway yesterday afternoon though!!!!!!!
And they had orange lucozade, which is always good. Hehe.
(Trying to make the change from calling Michael, Stiv. Because I prefer Michael, tbh. But its habit to call him Stiv. Plus people would have no idea who Michael is... Lol.)

I was soooo happy. If was so good to finally just hug them! And now I'm even more excited to go and stay with them. 2 and a half weeks to go! =)

My signal here is even worse than it usually is, and its been driving me crazy! I do seem to finally have found a spot which at least allows me to get texts when they are sent, rather than 3 hours later. So thats an improvement! And it means I can actually talk to Gavin again now. (Poor Gav.)

Anyway, yeah, in hospital. Far too much time to think.

I've been particularly lonely this admission. I dont know people on the ward, which is unusual for me. I feel rough, and I dont always know who to turn to.
Its times like this I miss having a boyfriend, just because it didnt matter what time it was, if I needed someone to talk to, I'd just call. I didnt feel guilty if I woke him up.

Its silly really. But when you're throwing up at like 3am, or in agony and cant sleep, its nice to have someone to go to. =(

xx

Tot Birthday!!

Happy Birthday Stiv/Tot/Michael!!!!

<3

Giant Epic Uber Hugs.

xxxxxxxxx

Cough, Cough, BLOODY COUGH.

If they made coughing, a sport... I'd be in there!!

SO fed up today. Cant even catch my breath properly just laid on my bed, because I cant stop coughing long enough.
And I'm bloody exhausted, even though I'm napping loads. Because I'm not getting any proper sleep. Its always just an hour here and there. =/

So back to Clinic this week I guess.

I have plans thursday night, saturday night AND sunday. Which even if I still manage all of, will probably be ruined by coughing, exhaustion and IVs.

CF Sucks. It ruins EVERYTHING.

I Hate Stairs.

Rawr! =)

Feeling slightly better than a few days ago, which is always good. Still not right though. My lungs hate me at the minute, I am CONSTANTLY breathless, on the most tiny and minimal effort. And then it takes me ages to get my breathing back under control. =/
Was getting home from town yesterday... 3 flights of stairs to get up to the train station... And then another flight of stairs when I got back to Leagrave. Its only a 4 minute train ride, I hadnt even recovered from the first lot!! I NEED TO DRIVE!

The stairs at home arent really fun either.
Its funny, because if I'm distracted, or excited, or hyper, I forget myself and try to run up the stairs at home.
It lasts about 4 steps.
I sort of crawl up the rest...

But oh well. We'll get there. I have far too much to look forward to, to let this get me down.

I escaped Clinic without IVs on wednesday... WIN! My lung functions were fairly stable at 41%, but I was wheezing a bit and feeling tight chested, so we decided to try some steriods and see how it goes. Doctor didnt seem to think my problems were infection based, and I agree, so home IVs seemed a bit of a waste of energy.
Got to go back on the 29th. To check I'm well enough before going up north. =)

Got to see Gavin after Clinic too. (More WIN! Lol.) I dragged him round town shopping for birthday presents. He survived the Disney store... AND Early Learning Centre! I'm quite proud to be honest.
He has this obsession that I am like Pam, from The Office US. Personally I have never watched it, so I have no idea if this is a good thing or not, lol. But he thinks I should do my hair like her now.
She actually has amazing hair, I would LOVE hair like hers. Might try it sometime, just to keep him happy.

Want to get this weekend out the way now.... Looking forward to next week. Got the Charity night down the pub on Thursday, and then Danni's Party on Saturday, and off to London to see Stiv and Claire on Sunday.
Gonna be exhausted by Monday, but it will be soooo worth it. <3
Will get lotsss of pictures too. Need to add to the collage on my wall. =)

Some of you will know, that the very beautiful, and amazing Kirstie Mills got married yesterday. She is now Mrs Kirstie Tancock.
http://www.itv.com/westcountry-west/wedding-for-kirstie94256/
She looked absolutely perfect, just like a princess. I wish her and Stu all the happiness in the world, and hope that she gets that call for new lungs very soon.

xx

Poorly, Whingey, Puppyish Tot.

I has GERMS!

Mum was off work during the week with some nasty virus. There were a few people she works with that had the same thing. I tried to look after her, from a distance. Then Dad got it. Then I gave up hope. I knew it was gonna come and attack me.
And it has.

Definitely not feeling too good. I've not been quite right anyway, I think if I'm honest I shouldve stayed in hospital a little longer last time. But I left as soon as I felt better so I didnt have to stay for the bank holiday. Its my own fault.
Now I have the added joy of constant headache, (Thats normal thanks to my sinuses, but I have pains in new parts of my head now) sore throat, stinging nose, constant sleeping, lack of appetite, and general crappiness. Plus its already hitting my chest. Coughing, wheezing, and general achey lung feeling.
Oh keep losing my voice too. <_<
Not fun.
Not funny either. Even if Gavin found it funny on friday.

On the plus side, my weight has been bothering me for a while, not helped by a little brother who likes to tell me I'm fat and/or ugly. Even if hes 'joking' like he claims, its still hitting my insecurities hard.
So the lack of appetite thing. Not bothering me so much.
Will have to be careful though. I have no problems with my weight, which is lucky as a CF patient. BUT when I do stop eating properly, it does just tend to drop. I dropped a stone after I broke up with Matt, in a couple of weeks. Gained it again over the next few months, but the hospital arent happy when it drops like that. They send the dietician to drive me insane.
I've lost 5 pound in the last week, what with reflux problems and being ill affecting my eating patterns. =/

So, I'm all moany and whiney at the minute. But I have no voice, so I am mainly just whiney. Like the noises a puppy makes when its sad. Lol.
Stiv referred to me as Puppyish, in his blog, last week. I think its appropriate to be honest. When I'm sad or ill, I get all whiney, and mopey, and just want to be cuddled. Lol. So now Puppyish is my favourite term.
Although, must remember that most sane people will not understand that. Lol. Do not use Puppyish to describe feelings to the Doctor...

Oh well. I have Clinic wednesday. I think.
(Must remember to ring Papworth tomorrow and check... Lol!)
Probably gonna mean IVs time again. I dont have any fall back oral antibiotics. Because I'm on Septrin permanently, and Cipro makes me ill. Migraines and vomiting, for the Oral or IV version. Nice. =/
I HATE IVS! Gah.
But I need to be well enough to see Stiv. So I shall get over it.

Oh well. Enough moaning for now I guess.

2 weeks til Totday!
4 and a half til Totweek.

Excited to meet everyone. Mainly, of course, TOT! But his friends too. Maybe speak to them when they arent drunk. Hehe.
Just hope they all like me. =|
*Scared*

xxxxx

Wristband =(

I was sat in the car today, being all thinky.
(Gavs fault for his silly music. Lol.)

A couple of weeks ago, the day I was discharged from Papworth actually, I broke my CF wristband.
Now those of you that know me very well, will know that I'd had that FOREVER. I got it years and years ago. And it was after Shahara passed away that I decided I was going to wear it all the time, to remind me of her and the reasons I need to make the best of every day.
And I pretty much have worn it all time time. On the rare occasions I've taken it off, its gone into a pocket and straight back on. When I went for surgery, Mum looked after it until I was awake enough to ask for it back.
As time went on, I lost other friends to CF, and it represented them all, but most of all Shahara. She was the first person with CF I 'knew' in person.

She was very poorly and we couldnt mix as she grew Cepacia and was in isolation, even back in the childrens ward days of no strict cross infection control.
She was also about 5 years younger than me. But we still used to write each other little notes, and get the nurses to run them back and forth. She drew me pictures, made cards, even made me a 'necklace'. She was lovely. She also had amazing handwriting considering she was about ten at the time.
When she passed away it hit me hard, because she was just so young. I was only 15 or 16 at the time. I was only just coming to understand CF properly, if I'm honest.

But yes. So I was very upset, when my wristband finally gave up. I meant so much to me. Silly, I know, but I did have a few little tears. =/
I'd only taken it off, so I could wash my hands and arms properly, because I'd got Imipenem on myself while I did my IVs. And it smells HORRIBLE! It had a slight tear in it already, and it just gave up and 'Ping'. Meh. =/
Both Dad, and Stiv, went out and ordered me new ones. Which turned up the same morning. I'm wearing both at the minute. And I love them loads. But, its just not the same somehow.

Also, saw Gavin today. =) We were sat in Luton, and he asked if we had an Apple Store, which we dont.
Then we started talking about how Milton Keynes is so much better because it has a LEGO STORE.
And then, we decided to just randomly go to Milton Keynes to look round the Lego Store and the Apple Store. Haha. Because we're cool.
I loved the Lego Store. I was so tempted to buy Stiv Lego for his birthday, so I can play with it when I go up north. <3 LOL!
Also, I was totally in TWO shopping centres today and never stepped in a New Look OR a Disney Store... Must be ill tbh!

xx

Tots, Sinuses, and Other stuffs.

Well! I'm much happier now.
I have heard from my Tot.
He had to have surgery today. Only sinus surgery, so not the most major thing in the world. He'd had it before. I've had it before. I knew it'd be fine. But I still worried constantly for those few hours.

I hate being helpless. Hes my best friend in the world, and I didnt like not being able to make him feel better.
It was very backwards. I'm supposed to be in hospital, and hes supposed to be at home. Thats how our relationship works! 8-)

Ironically, I got MY ENT appointment through this morning. So I'll be seeing the consultant at Addenbrookes on the 30th March, at 11.45. FINALLY.
I dont really care what they say, I'll just be glad if they can stop this constant pain, because its driving me crazy, and I cant stand it much more.

I was sat today, trying to work out what to get people for Birthdays. Got loads coming up in the next couple of months.
Pete, Stiv, Evie, and Danni are all this month.
And then Clairey, Pete, Liz, Emma, Sam, Ellis are all next month. Theres some others too I think... =/
I dont bloody know what to buy people!!
Was worrying about fathers day too. Until Ryan reminded me that I've already given him money for Dads present. Which I had totally forgotten!! Ryan couldve got away with that one... Silly boy! Hehe!

Only 5 weeks til I go to stay with Stiv and Claire now! And 2 and a half til I see them in London. Eeeeeeeeeeeeeeeeeeeeeeeeeep! <3

Epic hearts! =)

Love xx

Random Stuffness.

Sooo, whats happened since wednesday?

My train tickets arrivedd!!! Eeeeeeeeeeeep! The very next morning, which was pretty damn impressive tbh.
Sooooo excited now. The next 5 and a half weeks are going to be sooooo slow!
I'm going to see a TOT!
Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.
He will be sooooo sick of me after being stuck with me for 5 whole nights. I'll probably be kicked out by the friday night. Haha.
Or the first time I start singing reealllyyy badly to myself.
Also, I hope he has stocked up on Orange Lucozade before I get there... Hehe.
Lol.
Tot Tot Tot Tot Tot!
This is like 3 years of excitement, all squished into a few weeks! =)
And to think I was so excited about going to London for the Day! I keep forgetting about that part now! Haha.

Anyway, we went off the Southend thursday. The weather was absolutely gorgeous! Although, we were sat eating some chips on the seafront, and there was this HUGE gust of wind, and it blew chips everywhere, and a full can of coke straight into ryans lap! Which, naturally, I found HILARIOUS.
I'm such a mean sister. Lol.
I took lots of pictures with my new camera. I LOVE my camera.
Anddddd I SAW A PETEY!
Well, he saw me... I managed to walk straight past him. Even though I was looking for him. Clearly I'm very observant. =/

Saturday I saw Gavin. =) We went up to Ashridge, and it was sooo pretty. Was a little concerned that we'd end up getting lost on the way, like when we followed Ryans Sat Nav... And my sense of direction would be no help to anyone. But Gavins sat nav is clearly better cos we got there fine. Lol
Wandered through the trees and found this random little house/hut/shack/shed... I would imagine it belonged to whoever looked after the grounds at one point, but now its just something for kids to write all over. Haha.
So theres me, sat on the little deck, watching Gavin wander around aimlessly, then hes just all, 'I wonder how many people have been killed here...' Haha! Totally scares me at times. ;)

Then yesterday me and the family were GOING to go for a picnic... But it rained. So we just had our picnic in the car, cos we're cool like that. =)

It was fine by me, cos I feel pretty rough the last couple of days. All I want to do is sleep. =/ Meh.

I think I was awake for about 8 hours yesterday... Out of the whole day... Thats not right!! Lol.

Ah well.

Love Love xx

Tot Times!

My train tickets are booked!!

I will be leaving Luton just after 11am and arriving in Darlington around 3pm ish, on the 14th July, and leaving Darlington again about half past 3 on the 19th!!

Excited MUCH!!

I bought a new camera today! Its not the most amazing latest thing ever... But I think its amazing. 14 megapixals... 5x Optical zoom... HD Video... Optical Image Stabalisation.
Its more than good enough for what I use it for.

So now I can take many pictures of all my exciting summer stuff.

Speaking of which... SOUTHEND tomorrow! YAY!
Do love the seaside.

Anything this was just a mini blog, to share my excitement about Trains being booked.

Night night xx

Its meeeeeeee.

Hey guys! I'm still here, honest!!

Laziness, moodiness, lots of sleep and 2 days with no internet, meant I was pretty quiet while I was in Papworth.
But I am now home!! I was only there for 9 days!

I started to feel better, and asked if I could go home, and it was all good. =)
Lungs functions were up to 45%, not perfect, but better than the 37% I had when I went in.
I'd reached the point, where the benefits of being at home, and getting decent food, and proper sleep, far outweighed the benefits of having drugs and doctors and physios.

Gavin came to visit me on thursday, which was nice. =) We watched Patch Adams (Love that film), and I ate HARIBO BEARS! I also took a mini shower in Cherry Lucozade, thanks to him. Grrr! Haha. He shook my bottle up, and I forgot and opened it... Oops.
Hes also responsible for the discovery that I like Cherry Lucozade. And Lucozade will now make EVEN MORE money from me. Lol.

Also, the most exciting thing everrrrr... I'm going to see Stiv!!!
Hes coming to London at the end of June for some geeky sonic thing, and I'm going to see him and Claire on the sunday, and spend the day with them!!
Means getting up. In the morning. On a sunday. The day after Danni's 18th Party... Haha.
There are no words for this kind of excitement though. After 3 years I'm FINALLY going to see Stiv properly! I can hug him!! =D
We're also planning for me to go up and stay with them in July. I'm so excited.
Stiv made me smile while I was in Papworth too. Sent me a Glee Easter Egg and Mug. LOVE IT!

Spent soooo much money this week.
Went a little crazy online on monday, ordered a load of DVDs (including season 1 of Glee!) and 2 tshirts.
Then today I went into town, and exhausted myself walking round every shop there! Or at least it felt like it. Did get a dress, some shorts, and 3 new tops though. And some shoes. And I dont need to buy another card until July.
Note to self: Do not become friends with anyone else born in June or July. Lol.

Love xx

Sorry Guys... Moody Cow =/

Okay, so, I've become the most moody bitch on the planet the last 2 days.

I think its something to do with the drugs, because I just feel drained, and ten times worse than when I came in. I just feel really down, but I cant quite put my finger on what is wrong. I just dont feel right. My head is all over the place.

I can feel myself being miserable, but I cant snap myself out of it.
I daresay I'll settle, in a few days when my system gets used to everything.

My mood swings are epic tbh. One minute I'm giggling, the next I'm crying.

I've just got no energy like 95% of the time. I'm being terrible at replying to people, the only people I am really talking to are my parents, and Stiv, and Gavin. I just have no patience with anyone or anything. And I feel bad, but I cant seem to find the energy or the patience to sort myself out. Sorry guys.
Its nothing Personal. Love you all. Just struggling for a few days.

If you do want to get hold of me, inboxing me on facebook is probably your best bet.

On the plus side... Haribo are half price in the shop in the village. YAY!

Lots of Love xx

Didnt see that one coming...

So I come to clinic yesterday morning...
My lung functions were down to 37%. Only 1% off my lowest ever. So things clearly arent great.
I see the doctor, and decide to start home IVs, while I wait for a bed. Which is exactly what I expected to happen.
So, I go and hand my prescription in to pharmacy. Make my appointment for next week. And go back to wait for the nurse to access my port... I'm sat there reading my book, and the nurse comes in and says they have a bed. Now.
That NEVER happens!

Turns out it was for the best. Had 2 bleeds last night. =/ Not fun.

Anyway, Dad was my hero. He finished work early, so he could bring my stuff up last night. =) Which was lucky because I had nothing with me!!

So. I'm back in Papworth. Fun Fun.

On Fosfomycin and Imipenem. So I feel like Death. =/ Nice.

Complete lack of energy anyway, so gonna leave it here for now.

xx

IV Stashes, Mega Cute Songs, and Broken Phones

Clinic in the morningggg.
I'm actually looking forward to it... Thats unusual for me. =/
After 3 days of coughing up blood now, I am desperate to get there, so I can start getting better! I'm going out of my mind.

I've been to the chemist under my bed tonight, and sorted through what IVs I have stashed under there... So now I just have to remember tomorrow, and not let them send me home with any MORE! Get some of what I have used up!
Got 5 days worth of Fosfomycin and Imipenem.
And about 8 days of Tazocin... Which I'm allergic too. *Rolls Eyes*
And 3 weeks worth of Tobramycin.... Which we've stopped using because of the stupid ringing in my ears.
And dont get me started on the amount of saline and heparin I have!!

I'm trying to find little reasons to smile, because thats what keeps me sane when I feel this crap.

Dads being unbelievably nice to me today. I think he can tell how rough I feel. He took me out for breakfast this morning... Yum! And he came home with Lucozade and Milk bottles for me tonight. =) I'm easily pleased.

And Gavin made me listen to an amazingly cute song from Sweeny Todd. I've never actually seen the film, probably going to have to now. (Need to go to blockbusters anyway... Pay the fine for my late returns. Oops.) Lol. Its stuck in my head now, but I love it. I have also listened to it about a million times already, which wont have helped. Hehe. =)

♫ No one's gonna hurt you,
No one's gonna dare.
Others can desert you,
Not to worry, whistle, I'll be there.

Love it. =)

Stivs gone and broken his phone. While trying to fix it, ironically. Haha. Which is kinda silly. I'm a little bit lost not texting him constantly... He'd better hurry up and FIX IT! =/ MEH!

Thats what he gets for having a stupid fancy touch screen phone.
Should get an old brick, like I have. I swear, this thing is indestructable!! Probably just as well, my history with phones is... Dodgy... At best. Lol.

Oh well. Off to bed for me, I guess.
Got to get up at 7am. Eeeep.
Go and discover what my lung function is doing. Not looking forward to that. Its one of those things I never really WANT to know. =/ Lol.
Seeing as I'm out of breath just talking for very long, I'm not expecting great things.

Lovelove xx

The Little Things.

Sometimes, its the little things that mean the most.
So I thought I'd explain some of the little things, that I have grown to appreciate. =)

- Text Messages. I've mentioned this before, I believe. But I do love getting text messages. From some people, in particular, but they know who they are. Lol. I love having texts when I wake up in the morning. Knowing that someone was thinking about you, without you having to text them first. =)

- Hugs. This one is fairly common I guess. I love hugs. I am very cuddly... And sometimes a hug can fix anything. Maybe only temporarily, but it can. I would be quite happy to just snuggle up on the couch and watch tv, and be hugged. Lol.

- Letters and cards. Proper handwritten post! Its so rare to get anything handwritten anymore! And of course, anything that isnt from the hospital, or the benefits people, is a bonus.

- Holding Hands. This is irrelevant, while I'm single, but I used to love holding hands. Just that small show of affection. Not over the top, making people gag... Haha. But just enough to show the world that you are together, and you're happy for them to know it.

- Stars. I LOVE the stars. Absolutely adore them. I quite often just sit on my windowsill, and stare out at them on a clear night. They're just another example, of the world at its most beautiful, and most simple.

- Nature. I have always been easily pleased. And always loved something pretty. So nature is a fairly obvious one. There is so much natural beauty, all around us, all the time. The trees, and flowers, lakes and rivers, beaches, and forests... So much, everywhere we look. Even the weather is beautiful at times. A fresh blanket of snow. The sunshine, hitting water. Frost settled on the trees and grass, like a layer of diamonds...

- My Best Friends. Stiv and Emma. The are both amazing, in their own ways. Stiv may be 250 miles away, but I know I can always tell him anything, and trust him more than anyone. Love him lots. Emma, I've know since I was 6. No matter what, I know if I needed her, she'd be here in an instant. They keep me going.

- Photos. At times, I think I probably take too many photos. But I love capturing all those moments, and memories. Sometimes, when I'm not well, its nice to sit and flick through them all. See the smiles, and remember exactly why I keep on fighting... So there can be more memories, and more smiles.

xx

Return of the naughty lungs...

Firstly, I would like to thank anyone that took the time to read my last post, about life with CF.
I had a few lovely messages from various people, who said it was well written, and it means a lot that people read the things I write, let alone take the time to compliment me on them.
Its easy, and hard, to write about something so close to your heart. Its really easy to know what I'm feeling, but not always so easy to put into words for everyone else, especially with a subject which has so many different emotions attached to it.

Ah, so my lungs played nice for a little while. But they're back to their old tricks.
Went with Dad for a drink tonight. Did nothing but sit, and watch the band sing. And still ended the night with a nice bleed.
Stupid lungs. When will they learn they arent supposed to bleed!!
Wasnt my worst bleed ever, but it was still fairly nasty. And I'm still bubbling now.
I hate that feeling. You can only possibly understand it, if you've coughed up blood from your lungs. Its very strange.

Looks like a trip to Papworth next week then. =/
Meh.

I feel very Meh.
Meh is a good word tonight. Meh Meh Meh Meh.
Bird is overrated. Meh is the word.
Even Gavin said so. And hes clever, so it must be true.

Oh well, better to go to Papworth, and get it sorted before I feel really bad. Leaving these things does no good.

On the plus side, I have milk bottles. Which makes everything a little bit better.

Went to Tesco with Dad and Ryan earlier. We've walked round, got what we wanted, I've wandered round a few feet behind them, head in my phone texting Stiv... (Nothing new there... Haha.) Next thing I know, Dads telling the security guard that some random girl is following them around!! LOL! I do love my Dad at times, hes a nutter. Security guard was intelligent enough to know it was a joke. Can you imagine if he hadnt? HAHA!
I do have the most random giggles with Dad. Think thats why we're still fairly close... Because we have the same stupid sense of humour. Lol.

Saw EMMA last night!!! Was extremely happy. It had been over 3 months since I saw her, and I was missing her loads! We just had a quiet night in, and watched the Eurovision with her brother and his friends.
They were playing drinking games. They gave us countries, but we didnt join in with the drinking. I got Romania, Serbia, Switzerland and Hungary though... So I wouldnt have drunk much anyway. LoL!
And shes home for the summer in 2 weeks. So I cant wait.

This summer should be awesome. Last year everything kind of revolved around Matt and what he wanted to do, but this year I can fill my time as I wish. =)
Hopefully I'll get to go and see Stiv at some point, because that would be awesome. And hang out with Emma. And then harass anyone else I want to. =)
I also have to force someone to watch Labyrinth with me. Hehe!

I also, thanks to Emma, have this overwhelming urge to make my own pizzas. Well, not the dough... Although, I'd do that if I knew how! But like toppings and stuff, and then cook it. She did it last night.

Also, on a random note, I have discovered the song chasing cars makes me cry. Like proper crying. =/ I swear, it is not normal to be THIS emotional. Unless you're like drunk. Or pregnant. And I am neither or these things!!

MEH! Lol.

xx

Life With CF

What is it like to have CF?

This is a post I've been working on for a little while. I've changed it so many times now, I dont think I'll eve be completely happy with it. But here we go... This is what has survived the many edits.

This is just what CF is like for me...

Well, to begin with, there is no such thing as 'normal'. No two days are the same, and when you go to sleep at night, there is no knowing whether the next day will be a 'good' one or a 'bad' one, or anything in between.

You cannot see CF, as such. Until you are really ill, and needing oxygen or a wheelchair, there are no visible signs that you're 'sick'. Maybe a bit pale and skinny, but thats about it. (Although, I dont even have the usual CF weight problems at the minute. My weight is very very good.)
Sometimes there are ports, or pegs, to give little clues, but theyre easily hidden.
This can be amazing, because it leaves you free to live life without being looked at funny, without people staring and asking questions.
On the other hand sometimes it can be a pain because people dont realise, or they forget, that something isnt quite right, or you might have trouble keeping up.
Its a constant battle between wanting to be seen as normal, and making the allowances that you need to stop yourself from struggling quite so much.
For all its nice to be treated like everyone else, sometimes thats just not going to work. Lol.

Most days, its an effort to breathe. Usually breathing is just something people take for granted. Its a reflex. You dont have to think about it.
But a lot of the time, breathing IS something I think about. Because its really hard to get a proper breath in. My lung capacity is only 45% ish, on a good day, and I can feel it. When I breathe in its like my body wants more, it wants to keep going, but my lungs cant physically breathe in any more. I just end up breathing much faster than 'normal'. Its part of the reason breathing is far more exhausting than people realise at times.

And thats just the usual problems. Theres the days when it hurts to breathe, those days suck. When my lungs actually ache, its hard to explain. Just like a dull achey pain when I breathe in.

Then there is all the drugs.
Now I'm lucky in some ways that a majority of my drugs are tablets. I dont have any antibiotic nebulisers because I cannot tolerate them. They just make my airways close up. I say lucky... Thats not really lucky. I'd much rather have the nebulisers, and need less IVs in the long term.
But even so. I'm taking about 50 tablets a day. Plus the enzymes when I eat. So probably about 80 ish tablets a day. On a 'good' day.
I'm only 20... Its not what most 20 year olds have to deal with.
And I have to remember to actually take them. Even after years of taking all these pills, I still manage to forget. I dont know how its possible. Lol.
And making sure I've eaten before I take them in the morning. Because some of them just make me feel sick if I havent eaten. And throwing them up again, kinda defeats the object of taking them... Lol.

And remembering CREON! (Creon = Enzymes to digest food.) Omg. I'm okay if I'm at home, but as soon as I'm out of routine and enjoying myself, I'm not great at remembering to take them. Either that or I go out and realise that I dont have any on me, and then its the dilemma of am I going to eat without them or not... =/
When I was younger I always remember Mum stopping at the front door if she was going out, and double checking she had her purse, keys and phone. It was a little habit of hers.
If only it were that simple when I go out. I need to remember all the normal things, plus creon, inhaler, pain killers, reflux medication, tissues (in case I decide to cough up blood while I'm out)... And then if I'm on home IVs... Well, thats a whole other story. Haha.

It would be easier if CF was just one thing, but it affects so much. Its not just the lungs, its the liver, the digestive system, the sinuses, the joints and bones... Everything.

One thing that frustrates me now, is getting so easily worn out. You have to start making choices. Little things that most people dont have to consider. For example, You can go to the pub tonight with your friends. All you will do is sit and chat and listen to music, but if you go, you'll be too exhausted to go shopping tomorrow for *insert thing here*.
Or one that catches me out a lot is being asked to go out last minute, and then realising that if I want to go out, I need to wash my hair. If I wash my hair, I'll be too worn out to actually feel like going out anymore... So then what do I do? Lol.
Its so frustrating. I want to be able to do everything... I want to do everything my friends are. =(

One of the hardest things I've found about having CF, is making friends with other patients. Its the most natural thing in the world, to start chatting with someone and get friendly. We understand each other on a different level, have things in common, share feelings and hopes and fears...
But once you know them, once theyre your friend, you have to watch them suffering with all the same problems. Knowing there is nothing you can do to help them. Its horrible.
One of the most horrible feelings I've ever had was being in hospital just before Nick passed away. He was only a few feet away, and I wasnt even allowed to go and give him a hug.
It hurt in a way I'd never felt before.
And all the time, all the time this crap is happening to the people you've grown to care about, you cant stop fighting for a second, because you have to keep fighting for yourself.

Theres always that constant feeling, of knowing things wont really get better. There is no cure, theres no magic fix... Things might be stable for a while or they could get worse, but getting significantly better isn't really option.

As much as it hurts though, my friendships with other CF patients mean the world to me. I wouldnt give them up for anything.
Some of them have grown far past the fact we have CF, and become my closest friends.

Its one of the very few advantages to having CF, it has brought some amazing people into my life. For that, I am very grateful.

It can be completely depressing at times. I have my days when I just want to stay in bed all day, and cry, and ask 'why me?'.
But at the end of the day, it could be worse.

It could always be worse.

xx

(Hope most of that made sense in the end... Lol.)

Tweet!

You know when theres someone on your mind, and everything you see, everything you hear, every song you listen to, EVERYTHING makes you think about them, and your mind somehow connects everything to them...
Fucking annoying, isnt it? But I still love it anyway. Makes no sense. Lol.
I'm already the most insanely emotional person I know, with an ability to cry at anything. I dont need any added help! Sigh.

xx

I have TWITTER!
I dont really understand it. But I daresay I'll pick it up as I go along.
Only really got it as a new way to stalk Stiv. Haha. =)

FINALLY heard from the ESA people today. Theyre going to give me money!! Just need to send them a medical certificate, and like prove I'm not pretending to have CF or anything... (I bloody wish...) Haha.

Anyway, once thats done, I'll go on the assessment rate while their doctors assess me. Again with the making sure I'm really ill. Lol.
But thats £50 a week I didnt have before!! Plus they'll backdate it to when I sent my forms off. Yay.

I FINALLY wont be reliant on mum and dad for every tiny little thing!! There are no words to explain how happy this makes me.

In other random news, I have an obsession with dairylea cheese spread!! Omg, I had forgotten how much I love it.
Oh and I managed to throw myself the WHOLE way down the stairs yesterday and not hurt myself! Proud much, that takes skill.

Lungs are acting up a little bit. =/
It has been 6 and a half weeks off IVs, but I would like them to hold out a little longer.
I dont feel terrible, yet, but I'm getting quite coughy, and I've had a couple of little bleeds over the last few days. (Which I'm working on hiding from Mum... Cos she gets all over protective.) I've got tranexamic acid at home anyway, so I've started that, and I guess I'll ring Papworth next week if I still dont feel great.
I've learnt not to leave it til the last minute, I only end up regretting it when I feel like shit, and wonder why I didnt listen to mum. I'm relying on the power of positive thinking a bit though. Lol.

Got to stay well anyway. Got lots planned at the end of June.
CF Charity night down the pub. Evies 1st birthday!!!!! (Excited for that, much. Although she cannot POSSIBLY be nearly 1.) Danni's 18th Party. And Race for Life.
All in the space of 4 days!!
Got to find a costume for Danni's party still. ARGH!

xx

Bored of pretending.

I'm having one of those days today, I think.
I am just bored of pretending things are okay, when they arent. I dont specifically mean now, I mean in general.
Its been coming for a couple of days. It was Ryan that started all this off this time.

Ryans currently at college, studying his second year of a mechanic/engineering course. He goes to college all day Monday and Thursday, and half days on Tuesday and Friday.
He works sundays in the Co-op, and 3 hours on a wednesday. (Plus various overtime.)
Hes now got himself some work experience at a BMW Garage on a tuesday afternoon and all day wednesday, which will hopefully lead to an apprenticeship.
Now initially, I was really happy for him. But then he goes and ruins it all by being bitchy.

He turned round to me a couple of days ago, when I'd asked him if he could empty the bin, cos I was cooking dinner, and started on me, big time.
Going on about how he has 2 jobs, and is at college, and all I do is 'cook the bloody dinner sometimes', so I could do it myself and stop being so pathetic and lazy. Then went on to go on about how I should go and get a job, and then I'd understand how everyone else felt.

I added to my 'patheticness' at this point, and burst into tears.

Now, hes 18 years old. Hes not stupid. He knows WHY I dont work. He knows how often I'm ill and in hospital.

Its partly my fault I guess. I've always had this overwhelming urge to protect Ryan from the truth about CF. Obviously, as hes got older, thats got harder, but I'm still not completely honest about how bad I feel with him.
Hes my little brother at the end of the day, I was to be his big sister, I want to protect him and look after him. I dont want him to see me as being ill and sick all the time, regardless of how accurate that is.

I've always tried to protect my family anyway. Its just who am I. Right back when I was 14/15 and started being in hospital a lot.

Silly things like, the first time I had a longline put in, was gonna be first thing in the morning (like 7am) and I knew mum couldnt get there at that time, and she'd be upset that she wasnt there. So I didnt tell her. It seems silly now, but at the time it was a big thing! She came up later in the day, and there I was, with my longline. Lol.

I'd do pretty much anything to keep them from worrying. So its just annoying when I get stupid bitchy comments from people.
I just felt like turning round and telling Ryan exactly how much I would LOVE to have a job, and be healthy, and not feel like its a bloody effort to breathe most the time.

So, thats todays moan over. Lol.

xx